bit by bit i am learning to love rog again! it has been a long painful road, after 40 years of marriage i left him twice due to the pressures of this illness last year, but i think it is just like a bereavement you go through the stages of denial, hate, disbelief and then through them all again!
i accept now the progressive and unpredictability of this vile illness , i am lucky i have a great group of friends and family but i know that i cry on my own, people cannot cope with the carer not coping!
this illness has taken so much be determined for it not to take any more.
love as always
julie
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Julieandrog
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A wise and brave post, if I may say so, Julie. Good for you! Here's to more courage and perseverance and love for us all, carers and cared for, in the new year. Love back to you, Easterncedar
I know exactly what you are saying, we have been married for 44years and it's been so hard to accept what's happening, it is like you're grieving for the person you've lost due to this horrible disease a long time before the normal!
Keep strong, keep doing what you're doing to the best of your ability, I'm sure we are all doing the best we can under the circumstances!
I also cry to myself when no ones around I feel so alone at timesi, it's only normal!
Maybe there's hope for me then, I Think you've just summed up my feelings, I'm glad I'm not the only one who feels likeI don't want to be here! There's not a day when I don't cry
Debbie xx
Some may not like this reply. I assume that Roger did not have this affliction when you met him and you did not sign on as a care giver. You probably do not have a professional care givers education or training. You would like to have a life now and this decease has stolen two lives, Rogers and yours. You keep coming back so you must love Rodger . You try your best but you get weary. I know many like you, my wife is one. Very tired, frustrated, resolved dedicated Angels of Mercy. Professional caregivers do not work 24 hours a day, 365 .They do not try and do everything themselves, They do not try to learn about every aspect of the decease and make it the topic of every conversation. They take vacations, have other interests, take time for themselves, maybe even find a lover if necessary or at least friends and travel with them a bit or go to shows etc. They have a life. If you can not adjust to getting others to help and taking much more time for you, you will leave again exhausted and you will not be back. Resolve to not let him be a burden ,because he does not wish that on you, He wants you to be happy.
Hi Gymbag, I love your reply! It all sounds so easy, looking at it on paper, (ok on screen!) I would love to do all the things you say, feel very resentful, because I can't. But truth be told, I don't won't to! Not without S. He is my life, sick or well. We have always done everything together, I can't bear the thought of doing anything without him. I know this has to change, because one day, I will be on my own. I know I should try to start now, for his sake, as much as mine. I have to be as well rested as possible to be able to cope looking after him.
But the thought of having a lover, well.......................
haha a lover...Maybe it's the menopause talking...but that's the last thing....At this age, the risks are too high you're just cleanin up the last 50 to 70 years of the person...no thanks....
This illness pushes everybody to the limit, Ben is deteriorating quite quickly at present. My two adult sons found him looking at Dignitas on the web and became extremely upset. He says he doesn't want to be a cabbage or a burden. How heartbreaking is that? He didn't want this for himself or us, I certainly didn't want it. Unfortunately he needs someone yo love and care for him so I guess that's mostly down to me. So hard on everyone! Xx
I felt like leaving when my husband first got sick. I lived with him 38 years, and 30 of those years he drank alcohol so bad, I left him for a year. With this sickness, it is another responsibility that I have to take on instead of a partner. I felt cheated out of a true married life. My spouse has had this for about 3 years that we know of, and I know that I will see him through it. I cannot go back to work because I would have to have a full time sitter for him. I loved to work. I am a work-a-alcoholic. Once he does pass, I will get his pension, 401k, and maybe SS. Then I will try and go back to work and make a new life for myself. As far as another person in my life, NO. My children and grand-kids are enough to keep me busy. However, I do not want to give up the thought of never teaching again.
Your reaction is negative.
In every endevour one must evaluate the size of area one can reasonably protect without too high a risk of total catastrophic failure and loss of everything. If you can not take on less, limiting yourself to what is most important that is most likely what others may not be able to do and then arrange for others such as Home-care Nurses and assistants, family and friends to do the rest. If you drive yourself into the ground. You will have accomplished nothing and both of you loose.
I suggest that you show him this string and discuss this with him , be patient and truly listen to him. He will tell you what are the most important things he needs from you , probably spending quality time is all he wants. The patents fear of becoming a burden is usually very painful and can lead to an unreasonable solution, either throwing out the person he loves the most or checking out. Stop treating him like a child, listen to him give him things to accomplish himself, make him feel useful reassure him that you will look after yourself. and take time away from him and still be there twenty years from now.
Be Happy
PS: I am Rog, not your Rog, but Rog just the same, there are thousands of us yet we hardly make any noise, no one cares what we have to say because they do not wait to listen or because they are uncomfortable with the subject. Reality stinks. I have said what your Rog will say, I am sorry, I cant let you waste your life on me.
A year before she died, my wife scrawled a note to me. "Don't waste your time on me." Aside from making me cry, she made a wrong assumption. I felt it was a privilege to look after her. I wish I still were - not for Roisin's sake, of course, she is well out of it - but for mine. Reading these postings makes me realise how arbitrary and unpredictable PSP is; many carers have experiences far more devastating than mine, especially women who have to cope with lifting men who may be twice their weight! I was spared that.
You are all wonderful, ordinary people doing extraordinary things and just feeling the strain.
Hi, Christopher. I found this message of yours almost unbearably poignant. I hope you are finding a way to be happy now, although one never really does fully recover from a loss like yours. Love and peace, Easterncedar
Such interesting posts , so glad I came across them .
I have always though how very difficult it would be for someone in a loveless and difficult marriage .
It's physically tiring and stressful and in some cases the person who has the Parkinsons is no longer able to show any real affection back .
You cope because you want and need to . They are still the same person .
Although this new normal is not what anyone of us expected it is what it is .
I get tired worried frustrated angry all the emotions going but there is nothing else better or more important to me than keeping J as safe and comfortable as I can . It's what he has been doing for me for 60 yrs ,
I hope you can find you way through all this julieandrog . Take your respites where and when you can .
I get two days three hour it's big worry all the time I am away from him .
I was checking the news feed just now and so found this string thanks to you, cabbagecottage. I had not looked back after my early reply to the post - yes, very interesting. And now I wonder how Christopher is doing, and where did GymBag go? You have been with your husband 60 years. Oh my. More than a lifetime. We all have our challenges, but I think I have an odd advantage, in that I had not been with my sweetheart long before he was diagnosed. My marriage, a 20-year relationship, had failed 14 years before, so I had a long period on my own, and I imagine I will be going back to that, with all the pros and cons of independence. I wish I had met my guy sooner - curiously, he was divorced the same year I was, so we could have. I am sorry we did not have the time to make more good memories, to travel and play outside as we would have. Still, I am grateful to have him in my life. He has enriched me in many ways, and I am glad to take care of him - when I am not raving mad with frustration!
On we go - Thanks for pointing me to this post. Love and peace, Ec
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